Ahead of Mothers’ Day, leading sight loss charity the Royal National Institute of Blind People (RNIB) has released research that shows the barriers faced by mothers with sight loss during pregnancy and into their first years of motherhood.
This research report explores blind and partially sighted women’s experiences of motherhood, shedding light on societal attitudes, interactions with health and social care professionals as well as the solutions mothers with sight loss put in place and how these have shaped their motherhood journey.
Historically, society made decisions for disabled women, including those with sight loss, about their rights and responsibilities over their bodies, especially their right to have children. Up until the 1960s, women with sight loss were considered 'unfit' to parent and were subjected to sterilisation. Today, disabled women, including those with sight loss, continue to fight for respect and support, as highlighted by the Disabled Mothers Rights Charter and the lived experiences shared in this report.
This report aims to raise awareness and dispel myths about blind and partially sighted mothers. By highlighting their voices and experiences, we hope to foster a more inclusive and supportive environment for all mothers, regardless of their sight loss.
There are over 180,000 people with sight loss in Scotland, of which 60% are women. One of the biggest challenges faced by blind and partially sighted mothers is the misconceptions they’re faced with, both by the public, and healthcare professionals supporting them during their pregnancies.
- These misconceptions can stem from a lack of understanding and awareness about the capabilities and needs of mothers with sight loss.
- Health and social care professionals may underestimate the ability of mothers with sight loss to care for their children, leading to unnecessary interventions or inadequate support. Similarly, members of the public may hold biased views, doubting the competence of mothers with sight loss and questioning their parenting skills.
- These misconceptions can create additional challenges for mothers with sight loss, affecting their confidence and access to appropriate resources.
- It is crucial to address these misconceptions through education and awareness, highlighting the strengths and resilience of mothers with sight loss and promoting a more inclusive and supportive environment.
Key barriers include the quality of maternity care and inaccessibility of important information from healthcare providers and schools.
- Maternity care services are not adequately equipped to address the specific needs of mothers with sight loss which can result in a lack of confidence and increased anxiety during pregnancy and childbirth.
- Additionally, crucial information from healthcare providers and schools is not provided in accessible formats, such as braille, large print, or audio. This inaccessibility hinders mothers with sight loss from fully understanding and engaging with important health and educational information, impacting their ability to make informed decisions and advocate for their children's needs.
- Addressing these barriers is essential to ensure that mothers with sight loss receive the support and resources they need in their parenting journey.
Despite these challenges, women with sight loss demonstrate remarkable resilience and adaptability, finding accessible solutions and support networks to navigate motherhood.
- Mothers with sight loss have found innovative and accessible solutions to navigate the complexities of motherhood. By using technology, such as screen readers and AI-powered apps, they can manage daily tasks and stay informed. Additionally, mothers with sight loss often adapt their environments to be more tactile-friendly and organised.
- Support networks play a crucial role in their journey, providing emotional validation, practical advice, and a sense of community. Through peer support groups and online communities, mothers with sight loss can share experiences and learn from one another.
Previous research we had conducted in 2021 showed a significant disparity in experiences of accessing health and social care for women with sight loss compared to men with sight loss. We wanted to explore this topic further to better understand the unique experiences of blind and partially sighted women across a broad range of topics.
Through a series of focus groups, a survey and analysis from online discussions held between October to December 2024, we explored the needs and experiences of woman with sight loss.
Of those surveyed by RNIB, two fifths (41%) of blind and partially sighted women said there were misconceptions about mothers with sight loss, with health care professionals being the most common group identified of those who hold these attitudes (26%). Whilst it was noted that experiences could differ based on location, women with sight loss shared negative experiences surrounding the beliefs and attitudes of health professionals.
Janette Scott from Stirling has the sight loss conditions retinitis pigmentosa and glaucoma.
“As a blind mum, people had misconceptions about what they perceived a blind person could or couldn't do. They assumed my children would not be able to read because I am blind, or that their homework wouldn’t be properly supervised. As far as my children were concerned their mum was normal to them and it was just her eyes that did not work properly. My children always used to ask me how I knew when they were up to no good. I never told them until they were much older that when everything went quiet, it meant they were up to something!”
Janette sitting with her first guide dog who was a yellow lab named Dino, at the old Guide Dog Training Centre at Forfar
According to the research, misconceptions from health care professionals can lead to unnecessary safeguarding plans and involvement from social workers, despite many blind and partially sighted mothers feeling their confidence to parent was not impacted by their sight loss.
Another research participant spoke about the perceptions of healthcare providers when pregnant: “When I was first pregnant, I went to the hospital and I had a midwife who asked, “Are you going to cope with a baby?” I said “What sort of a question is that?” Then she turned round and asked my husband the same.”
There also exists a belief amongst some that children of mothers with sight loss are at risk and unsafe. This theme was found across our analysis with 20% reporting that they felt that social care professionals hold misconceptions. This misconception leads to unnecessary safeguarding plans and social worker involvement.
It is important that education and awareness of the abilities of blind and partially sighted mothers is increased within society, so it is recognised as normal.
RNIB’s #BeforeYouAsk campaign could help to dispel myths around women with sight loss being mothers and reduce the stigma attached.
A further barrier faced by mothers with sight loss is information about their health and pregnancy not being provided in accessible formats. Of those surveyed by RNIB, 14% of women reported that information given to them by their health visitor was not provided in an accessible format, including audio, braille or large print.
When receiving information from hospitals, 12% said they did not receive communication in a format that was accessible to them, whilst 10% did not receive accessible information from their GP surgery.
There is a crucial need for comprehensive support and understanding among professionals to dispel myths and reduce stigma, fostering a more inclusive environment that respects the dignity and autonomy of individuals with sight loss.
RNIB Scotland is urging NHS Scotland for nursing and midwifery education to include the need for accessible communications. The charity also hopes to ensure a commitment from health providers for consistency of care across the country when providing compassionate and accessible maternity care for people with sight loss.
Laura Jones, NHS Engagement Manager at RNIB Scotland says: “We must demystify the myths about motherhood and sight loss. This report clearly demonstrates that mothers who are blind and partially sighted are being left behind, without essential support and information, at a time of need.
“RNIB Scotland is calling for nursing and midwifery training to include the need for inclusive communications at the very beginning of the parent journey. In addition, we want to work with external partners to ensure that perinatal peer support and community-based services include routes that are accessible to ensure inclusivity.”
To address public perceptions and misconceptions about mothers with sight loss, it is important to showcase how they navigate parenting by their problem-solving abilities and the solutions and technologies they use. For example, using smartphone apps such as What Three Words as a game to help with navigation and also for putting audible things or very brightly coloured things on their children to help identify where they are.
Connecting mothers with sight loss is highly recommended as it offers a unique and invaluable source of support and understanding, which can enhance wellbeing and confidence, helping mothers to thrive in their parenting journey. It provides the opportunity for mothers to share their experiences, challenges and solutions with others who truly understand their situation without a geographic boundary.
